NeuroNav is in the Self-Determination Space. Got to do an internship there from end Jul 2020
- Party with a Plan https://www.neuronav.org/post/party-with-a-plan
Impact of Parental Training and Race on Services Negotiated at an IEP
This was an research paper written for my Psych 167AC Stigma and Prejudice Course with Prof Mendoza-Denton.
(NOTE: The data itself is all made up - that was the point of the project but all the lit review and findings very much reflect reality of the ground situation for many families with autism)
With a diagnosis rate of 1:54 children, Autism Spectrum Disorder or ASD, has of late become the most rapidly diagnosed neurodevelopmental disorder. As a result, an increasing number of children are entering the special education system. While free public education for non-disabled school age children in the United States has been around for more than a century, the inclusion of disabled students is fairly recent with the 1975 Individuals with Disabilities Education Act, or IDEA (DREDF, 2014). IDEA stipulates that students be included in the public education system with related services, “if students require them in order to benefit from specially designed instruction,” (DREDF, 2014). Given that autism is a spectrum disorder and can vary widely in how it affects a specific individual, there is no uniform set of services that can be applied across the board. Thus the type and hours of services a child actually receives is negotiated at the IEP (Individual Education Plan) meetings between the school district and the parents of the child. The only redress to IEP disagreements is through mediation and lawsuits which can be intimidating for parents who enter the system with little to no knowledge of disability education.
Parallelly, Correll et al. (2002), points to societal judgements made about the Black community; that they are somehow less deserving. Goff et al. (2014) highlights racial bias in that Black children are thought to be less innocent than their White counterparts. What this racial bias translates to is substantial delays in the diagnosis of ASD for Black children, after the parents initially expressed concerns about the child’s development, despite the parents having health insurance (Costantino et al., 2020). Delays in the referral process and lack of timely ASD diagnosis often meant missing the crucial early years of services that could potentially lead to better outcomes (Dababnah et al., 2018). Non-White parents were often told that it was not ASD or given other diagnoses (Martinez et al., 2018). The 2020 Obeid et al., study further demonstrated implicit racial bias in ASD identification and stigma. In the study, White participants were more likely to diagnose Black children with conduct disorder and White children with ASD while the reverse was true for Black participants. In addition, Black parents themselves would delay in reporting ASD symptoms, mistaking it for disruptive behaviors, compared to White parents, even if the symptoms were more severe (Donohue et al., 2017).
Hypothesis: Parents who undergo IEP training will get more hours of services for their autistic child from the public school district as compared to parents who don’t, and the service hours are moderated by race, such that White parents will receive more services for their autistic child than Black parents.
The sample size was 100 parents (either father or mother) of children with a clinical ASD diagnosis of elementary age, attending a special education program in the United States. 50 of the parents were Black and 50 were White. Each racial group was further divided into two groups, the experimental condition attending a one day training on special education laws, legal rights and the IEP process. The control groups did not receive this IEP training.
The study uses a 2 x 2 design. The first factor of parental training was manipulated with two levels, training or no training. The second factor of race, had two levels, Black or White. The dependent variable in this study was the number of hours per week of related services negotiated at the child’s IEP meeting between the school district and the parents following the training (or control). Related services refer to additional services on top of what is provided to all students in a special education classroom. These include 1:1 support hours, speech therapy hours, occupational therapy hours, behavioral therapy hours etc. Aggregated data for the four levels were analyzed.
Descriptive statistics of aggregated (fake) data for each of the four profiles are summarized in the table below. The mean for the different profiles is also represented in graphical form below.
The data from the study supports the hypotheses. The above graph clearly demonstrates a main effect of parental training level, such that a IEP training is positively correlated to more service hours that are negotiated with the school districts at IEP meetings, independent of race There is a second main effect of race, such that the school district provides more service hours to White children rather than Black children. In addition, as is evident by the differing slopes of the two lines representing race in the graph, there is an interaction effect or a joint effect that cannot be explained away by each main effect in isolation. Thus while parental training leads to better outcomes in terms of service hours, this effect is moderated by race, such that being White leads to better outcomes than being Black.
Though it is not designed to be so, in reality the IEP has become an exercise in skill and artful negotiation. On the one side are school districts which are historically underfunded and under-resourced so will watch every dollar that needs to be spent despite laws that insist on appropriate supports to enhance inclusion. Part of the issue is the ongoing stigma around disability itself, that it would be a waste to spend resources on kids who would not improve anyway. On the other hand are the needs of autistic children; effective and timely delivery of support services can positively impact their outcomes further on in their lives.
The results of this study are therefore not surprising. A working knowledge of and training of their child’s rights under IDEA and understanding the IEP process gives parents the confidence to act as an equal amongst the professionals, educators and other experts that dominate the IEP table. Trained parents can argue for and justify the need for services. For the same reasons, trained parents are better equipped to go to mediation or sue in order to resolve IEP disagreements.
The other main effect of race has historically been an issue across the board as discussed earlier in the introduction section, and it is not surprising that this is the case when it comes to services received by Black children than White children. Black children may be seen as less deserving of services and more so if they have a disability which already has a lot of historical stigma attached to it. So while the trained Black parent is able to obtain more services than a non-trained parent (irrespective of race), the effect is dampened by the race factor. That is to say, for the Black parents, the gap in services has not closed due to the fact of training alone.
This study has major limitations. Outcomes cannot be limited to just two factors as there can be other extraneous issues that come into play. For instance, funding for school districts is often linked to property taxes and poorer neighborhoods housing minorities may be even more resource constrained. The severity of ASD and other comorbid diagnosis and conditions have also not been factored in.
A future direction would be to further examine this interaction effect and also examine the effects of severity of ASD, and resultant outcomes in terms of services received.
Constantino, J. N., Abbacchi, A. M., Saulnier, C., Klaiman, C., Mandell, D. S., Yi Zhang, Hawks, Z., Bates, J., Klin, A., Shattuck, P., Molholm, S., Fitzgerald, R., Roux, A., Lowe, J. K., & Geschwind, D. H. (2020). Timing of the Diagnosis of Autism in African American Children. Pediatrics, 146(3), 1–9. https://doi.org/10.1542/peds.2019-3629
Correll, J., Park, B., Judd, C., & Wittenbrink, B. (2002). The police officer's dilemma: Using ethnicity to disambiguate potentially threatening individuals. Journal of Personality and Social Psychology, 83(6), 1314-1329.
Dababnah, S., Shaia, W. E., Campion, K., & Nichols, H. M. (2018). “We Had to Keep Pushing”: Caregivers’ Perspectives on Autism Screening and Referral Practices of Black Children in Primary Care. Intellectual & Developmental Disabilities, 56(5), 321–336. https://doi.org/10.1352/1934-9556-56.5.321
Donohue, M. R., Childs, A. W., Richards, M., & Robins, D. L. (2019). Race influences parent report of concerns about symptoms of autism spectrum disorder. Autism: The International Journal of Research & Practice, 23(1), 100.
DREDF. (2014, March 09). Individuals with Disabilities Education Act (IDEA). Retrieved from https://dredf.org/legal-advocacy/laws/individuals-with-disabilities-education-act-idea/
Goff, P., Jackson, M., Di Leone, B., Culotta, C., & DiTomasso, N. (2014). The essence of innocence: Consequences of dehumanizing Black children. Journal of Personality and Social Psychology, 106(4), 526-545.
Martinez, M., Thomas, K. C., Williams, C. S., Christian, R., Crais, E., Pretzel, R., & Hooper, S. R. (2018). Family Experiences with the Diagnosis of Autism Spectrum Disorder: System Barriers and Facilitators of Efficient Diagnosis. Journal of Autism & Developmental Disorders, 48(7), 2368–2378. https://doi.org/10.1007/s10803-018-3493-1
Obeid, R., Bisson, J. B., Cosenza, A., Harrison, A. J., James, F., Saade, S., & Gillespie-Lynch, K. (2020). Do Implicit and Explicit Racial Biases Influence Autism Identification and Stigma? An Implicit Association Test Study. Journal of Autism and Developmental Disorders, 1. https://doi.org/10.1007/s10803-020-04507-2
(NOTE: The data itself is all made up - that was the point of the project but all the lit review and findings very much reflect reality of the ground situation for many families with autism)
Impact of Parental Training and Race on Services Negotiated at an IEP
With a diagnosis rate of 1:54 children, Autism Spectrum Disorder or ASD, has of late become the most rapidly diagnosed neurodevelopmental disorder. As a result, an increasing number of children are entering the special education system. While free public education for non-disabled school age children in the United States has been around for more than a century, the inclusion of disabled students is fairly recent with the 1975 Individuals with Disabilities Education Act, or IDEA (DREDF, 2014). IDEA stipulates that students be included in the public education system with related services, “if students require them in order to benefit from specially designed instruction,” (DREDF, 2014). Given that autism is a spectrum disorder and can vary widely in how it affects a specific individual, there is no uniform set of services that can be applied across the board. Thus the type and hours of services a child actually receives is negotiated at the IEP (Individual Education Plan) meetings between the school district and the parents of the child. The only redress to IEP disagreements is through mediation and lawsuits which can be intimidating for parents who enter the system with little to no knowledge of disability education.
Parallelly, Correll et al. (2002), points to societal judgements made about the Black community; that they are somehow less deserving. Goff et al. (2014) highlights racial bias in that Black children are thought to be less innocent than their White counterparts. What this racial bias translates to is substantial delays in the diagnosis of ASD for Black children, after the parents initially expressed concerns about the child’s development, despite the parents having health insurance (Costantino et al., 2020). Delays in the referral process and lack of timely ASD diagnosis often meant missing the crucial early years of services that could potentially lead to better outcomes (Dababnah et al., 2018). Non-White parents were often told that it was not ASD or given other diagnoses (Martinez et al., 2018). The 2020 Obeid et al., study further demonstrated implicit racial bias in ASD identification and stigma. In the study, White participants were more likely to diagnose Black children with conduct disorder and White children with ASD while the reverse was true for Black participants. In addition, Black parents themselves would delay in reporting ASD symptoms, mistaking it for disruptive behaviors, compared to White parents, even if the symptoms were more severe (Donohue et al., 2017).
Hypothesis: Parents who undergo IEP training will get more hours of services for their autistic child from the public school district as compared to parents who don’t, and the service hours are moderated by race, such that White parents will receive more services for their autistic child than Black parents.
Method
The sample size was 100 parents (either father or mother) of children with a clinical ASD diagnosis of elementary age, attending a special education program in the United States. 50 of the parents were Black and 50 were White. Each racial group was further divided into two groups, the experimental condition attending a one day training on special education laws, legal rights and the IEP process. The control groups did not receive this IEP training.
The study uses a 2 x 2 design. The first factor of parental training was manipulated with two levels, training or no training. The second factor of race, had two levels, Black or White. The dependent variable in this study was the number of hours per week of related services negotiated at the child’s IEP meeting between the school district and the parents following the training (or control). Related services refer to additional services on top of what is provided to all students in a special education classroom. These include 1:1 support hours, speech therapy hours, occupational therapy hours, behavioral therapy hours etc. Aggregated data for the four levels were analyzed.
Results
Descriptive statistics of aggregated (fake) data for each of the four profiles are summarized in the table below. The mean for the different profiles is also represented in graphical form below.
Discussion
The data from the study supports the hypotheses. The above graph clearly demonstrates a main effect of parental training level, such that a IEP training is positively correlated to more service hours that are negotiated with the school districts at IEP meetings, independent of race There is a second main effect of race, such that the school district provides more service hours to White children rather than Black children. In addition, as is evident by the differing slopes of the two lines representing race in the graph, there is an interaction effect or a joint effect that cannot be explained away by each main effect in isolation. Thus while parental training leads to better outcomes in terms of service hours, this effect is moderated by race, such that being White leads to better outcomes than being Black.
Though it is not designed to be so, in reality the IEP has become an exercise in skill and artful negotiation. On the one side are school districts which are historically underfunded and under-resourced so will watch every dollar that needs to be spent despite laws that insist on appropriate supports to enhance inclusion. Part of the issue is the ongoing stigma around disability itself, that it would be a waste to spend resources on kids who would not improve anyway. On the other hand are the needs of autistic children; effective and timely delivery of support services can positively impact their outcomes further on in their lives.
The results of this study are therefore not surprising. A working knowledge of and training of their child’s rights under IDEA and understanding the IEP process gives parents the confidence to act as an equal amongst the professionals, educators and other experts that dominate the IEP table. Trained parents can argue for and justify the need for services. For the same reasons, trained parents are better equipped to go to mediation or sue in order to resolve IEP disagreements.
The other main effect of race has historically been an issue across the board as discussed earlier in the introduction section, and it is not surprising that this is the case when it comes to services received by Black children than White children. Black children may be seen as less deserving of services and more so if they have a disability which already has a lot of historical stigma attached to it. So while the trained Black parent is able to obtain more services than a non-trained parent (irrespective of race), the effect is dampened by the race factor. That is to say, for the Black parents, the gap in services has not closed due to the fact of training alone.
This study has major limitations. Outcomes cannot be limited to just two factors as there can be other extraneous issues that come into play. For instance, funding for school districts is often linked to property taxes and poorer neighborhoods housing minorities may be even more resource constrained. The severity of ASD and other comorbid diagnosis and conditions have also not been factored in.
A future direction would be to further examine this interaction effect and also examine the effects of severity of ASD, and resultant outcomes in terms of services received.
References
Constantino, J. N., Abbacchi, A. M., Saulnier, C., Klaiman, C., Mandell, D. S., Yi Zhang, Hawks, Z., Bates, J., Klin, A., Shattuck, P., Molholm, S., Fitzgerald, R., Roux, A., Lowe, J. K., & Geschwind, D. H. (2020). Timing of the Diagnosis of Autism in African American Children. Pediatrics, 146(3), 1–9. https://doi.org/10.1542/peds.2019-3629
Correll, J., Park, B., Judd, C., & Wittenbrink, B. (2002). The police officer's dilemma: Using ethnicity to disambiguate potentially threatening individuals. Journal of Personality and Social Psychology, 83(6), 1314-1329.
Dababnah, S., Shaia, W. E., Campion, K., & Nichols, H. M. (2018). “We Had to Keep Pushing”: Caregivers’ Perspectives on Autism Screening and Referral Practices of Black Children in Primary Care. Intellectual & Developmental Disabilities, 56(5), 321–336. https://doi.org/10.1352/1934-9556-56.5.321
Donohue, M. R., Childs, A. W., Richards, M., & Robins, D. L. (2019). Race influences parent report of concerns about symptoms of autism spectrum disorder. Autism: The International Journal of Research & Practice, 23(1), 100.
DREDF. (2014, March 09). Individuals with Disabilities Education Act (IDEA). Retrieved from https://dredf.org/legal-advocacy/laws/individuals-with-disabilities-education-act-idea/
Goff, P., Jackson, M., Di Leone, B., Culotta, C., & DiTomasso, N. (2014). The essence of innocence: Consequences of dehumanizing Black children. Journal of Personality and Social Psychology, 106(4), 526-545.
Martinez, M., Thomas, K. C., Williams, C. S., Christian, R., Crais, E., Pretzel, R., & Hooper, S. R. (2018). Family Experiences with the Diagnosis of Autism Spectrum Disorder: System Barriers and Facilitators of Efficient Diagnosis. Journal of Autism & Developmental Disorders, 48(7), 2368–2378. https://doi.org/10.1007/s10803-018-3493-1
Obeid, R., Bisson, J. B., Cosenza, A., Harrison, A. J., James, F., Saade, S., & Gillespie-Lynch, K. (2020). Do Implicit and Explicit Racial Biases Influence Autism Identification and Stigma? An Implicit Association Test Study. Journal of Autism and Developmental Disorders, 1. https://doi.org/10.1007/s10803-020-04507-2
A work in Progress when it come to the Disability Community
“As a disabled autistic, I have often wondered about the conversations on inclusion, access and civil rights that still seem to be a work in progress when it comes to the disability community.”
-Hari Srinivasan
“This is Our Campus Too”, The Daily Californian
Neurodiversity in Ireland
I presented at this Neurodiversity Conference. Imagine - all the way in Ireland (virtually!)
Here is the video Recording of Event
#IDPWD Inclusion vs Belonging
CHAS EDI International Conference on Neurodiversity December 2020
Neurodiversity : A Paradigm Shift in Higher Education and Employment. 3rd and 4th December 2020.
https://www.ucd.ie/chas/newsandevents/chasediinternationalconferenceonneurodiversitydecember2020/
https://www.youtube.com/watch?v=aA3s_MjqihM
#DearWorldLive
Quite an experience to be on with the amazing Judith Heumann and Haben Girma on #DearWorldLIve Doha Debates today.
Recording at
or
NewsPaper Articles
Redefine the Table
“It is the existence of laws like the ADA that ... allows me to not just demand a seat at the table so that individuals like me can be part of the conversations around change, but question if the table itself needs to be redefined.”
-Hari Srinivasan, “Born Into the ADA”
The Daily Californian
Belongingness
Acceptance and Inclusion of disabled people into all walks of society is no doubt an important first step.
But what we need goes beyond inclusion. Inclusion means just existing in the same space as non disabled people.
Disabled people need to not just be included, we need belonging. Belonging is a sense of community, where you are accepted as an equal member of the group and where your life is seen as having worth.
Belongingness in society, is I think, what we all yearn for at the end of the day, whether we are disabled or not.
Starting today, let us all strive together towards Belongingness.
-Hari Srinivasan
Making Decisions
On Making Decisions about what path to take
Thoughts to mull over!!
One is something that the abolitionist, Frederick Douglass had said about education and knowledge being the key to freedom. This had struck a deep chord when I first heard it. I felt I had to go to college, not just because I loved knowledge and learning, but a college degree would also give me better access to a seat at the table. The table, that is apparently making decisions about me and my fellow autistics.
The second is a line from Robert Frost’s, Two Tramps in Mud Time. “My object in living is to unite my avocation and my vocation.” I too, truly believe that you will be happiest, if your work aligns with what you are passionate about.
The third is that many people often end up doing something totally different than what they studied in college or imagined they would be doing. And that’s totally ok. You can act only based on your current information, you zig zag a bit, maybe loop a little too. I’ve started off with a Psych major here at UC Berkeley, but who knows what I will end up doing many years later.
-Hari Srinivasan @ ASAN - Transitions to Adulthood
Happy Thanksgiving
Happy Thanksgiving everyone
The importance of Gratitude
As the name suggests, Thanksgiving is a time when our minds turn towards gratitude and giving thanks. But what exactly is gratitude. The 18th century philosopher and economist, Adam Smith, had deemed Gratitude as the Social Glue of economic culture.
In her book, The How of Happiness, American psychologist, Sonja Lyubomirsky lists “Expressing Gratitude” as Happiness Activity No 1. She says most people associate gratitude with saying thanks to someone but gratitude is actually much more - wonder, appreciation, looking at the bright side, fathoming abundance, counting blessings, present-oriented, not taking things for granted, coping and counting blessings.
In an article for the Greater Good Science Center at UC Berkeley, Robert Emmons, the world leading researcher on gratitude, explains that there are two components to gratitude. The first is affirmation of goodness. Life is undoubtedly filled with both good and bad moments. “But when we look at life as a whole, gratitude encourages us to identify some amount of goodness in our life.”
The second component of Gratitude according to Emmons is figuring out the source of goodness. It is be a humbling experience as we focus not just on our pride in personal accomplishments but acknowledge the dependence on others, even higher powers, that “gave us many gifts, big and small, to help us achieve the goodness in our lives”
Emmons goes on to explain that the benefits of gratitude span the physical, psychological and social realms. It magnifies positive emotions, blocks negative emotions, makes you more stress resistant and have a higher sense of self-worth. But what is most striking according to Emmons, are the social “relationship-strengthening” benefits. Various studies have demonstrated that people who practice gratitude are more helpful and compassionate towards others. He also urges us to think outside the box when it comes to what is gratitude. We can as Mother Theresa had once said, be grateful for what we can give rather than for what we receive.
Emmons points out that practicing gratitude is not easy as it can mean we feel we are less in control or that we are giving away credit due to us to others. He suggests two simple activities to get started.
A gratitude journal listing just five things once a week.
Count your blessings on a regular basis, maybe once a day
In a 2015 article by psychologist Juliana Brieines for The Greater Good Science Center adds further practises.
Mental Subtraction of Positive Events, that is, not taking things for granted. Consider the positive events in your life and imagine what your life would have been like without them.
A Savoring Walk once a week by yourself, where you “pay close attention to as many positive sights, sounds, smells, or other sensations as you can.”
This Thanksgiving, let us see what the NeuroNav team is grateful for
Hari: I’m constantly grateful to the various people at different points in my life who have supported me in many ways. I’m grateful to God, for my talents and my intelligence which was not something taught or learned during my many years in special education. I’m grateful to everyone at UC Berkeley for providing a supportive environment that helps me pursue my desire for a college education, an aspiration that cannot be taken for granted for people with significant disabilities like me. I’m grateful to my family for their never give up attitude towards me and especially in this time of covid which has been difficult for me. And I’m grateful that I too am able to contribute back to society in whatever small way I can.
Sabrina - This year I am grateful for my family, including my new husband. They have always been such a huge anchoring force in my life, and they have been that and more in these unpredictable times. And while it’s been hard not to see many of them in person, our weekly Zoom calls have become my favorite weekend activity, and one that I hope we will continue even as things find their way back to “normal.”
Emma - I am most grateful for the health of my family, especially my father who works at a hospital as a physician. I am also grateful for my husky who keeps me smiling :)
Nick - Even though I could not have expected how this year has turned out, I am very grateful for the friends and family I hold near and dear to my heart. They have supported me in the ups and downs of this time and I love them very much.
Rachel - I am grateful for new opportunities and the great people in my life.
Katie - I’m grateful for my friends, family, and my health. In a time that could be very isolating (and has been for many), I’ve been able to stay connected (virtually and socially distanced) to the people who I care most about. I think that has really helped me stay sane (ish!) throughout the pandemic.
Full Article here: https://www.neuronav.org/post/the-importance-of-gratitude
Ryan Speaking to Ryan
“I use this text to speaking voice called Ryan. There are only a limited number of affordable natural sounding voices with an American accent, so when two non speaking guys are chatting, it is like Ryan speaking to Ryan, which is very disconcerting; an erasure of the individual.”
-Hari Srinivasan @ASAN’s Transitions to Adulthood, Nov 2020
Love Each Other
An Apt message for the Times @Albany Waterfront Trail
The Albany Waterfront Trail meanders behind the Golden Gate Fields Racecourse in Albany, CA and hugs the bay as it stretches to a little strip of land, simply known as the “Albany Bulb.” It’s a chance to see the Bay Bridge on one side and the Golden Gate Bridge on the other, even as the sun sets over the silver ocean at dusk. Nature and the universe continue to shower their infinite love upon all us humans living on this beautiful planet that we call home.
As I was ambling along the trail, I came across this sign painted on a wood bench:
“Love Each Other, Wear A Mask.”
But what is even more timeless, is the first part of the statement, “Love Each Other.” We all witnessed the hoarding of toilet paper and panic buying earlier this year as soon as the Pandemic began. But during this time of global crisis, we also saw unprecedented levels of altruism, generosity and kindness towards strangers across the world. We had almost reached a state of “Agape,” the Greco-Christian term for unconditional love of our fellow human beings or the Sanskrit “Metta;” in transcending consideration of the self into seeking what’s best for others.
It turns out that humans are innately built for love, goodness, kindness and compassion.
So how do we consciously move towards this state so that this innate goodness becomes a part of our everyday existence?
In my class on “Basic Issues in Cognition” at UC Berkeley, we learned that loving kindness actually begins by developing acceptance towards oneself, and if there was resistance, it usually indicated feelings of unworthiness. If you cannot love yourself, you are an empty cup with nothing to give to others.
Professor Davina Chan led us through a simple loving kindness exercise, which can be practiced daily for a few minutes.
Start with Loving Kindness towards yourself by repeating.
May I be happy
May I abide in well-being
May I be secure
May I dwell in safety.
This warmth is then directed towards others, first to people you care about then extended to acquaintances, strangers and even those you regard as enemies.
Regular practice of simple actions can thus lead to an avalanche of profound change within ourselves and the world. The wood bench on the trail, sums it up - “Love each other. Wear a mask.”
Let us begin today!
Clarifications, not Mistakes
Clarifications, Not Mistakes.
Life is never a straight line even for NTs. When you are autistic & that too nonspeaking, making mistakes will be inevitable - there are very few role models or navigation maps to follow.
So not only are we on Robert Frost’s less travelled road, but we often have to create this road from scratch. What all this means is that, we are going to not just make mistakes, but a ton of mistakes too.
When you think of mistakes as clarifications, it's a chance hopefully, to backtrack a bit, adjust a bit, and get back in there”
-Hari Srinivasan @ ASAN’s “Transitions to Adulthood” Panel, Nov 2020
Bruno Bettelheim and the "Empty Fortress" Theory: A Misguided Understanding of Autism
Bruno Bettelheim and the "Empty Fortress" Theory: A Misguided Understanding of Autism
In the mid-20th century, Bruno Bettelheim, a prominent psychologist, became a well-known figure in autism research with his controversial theory that described autistic children as living in an "empty fortress." His analogy suggested that autistic children had retreated into an emotional isolation, building an invisible wall to protect themselves from what he saw as their harsh, unloving environments—primarily caused by their mothers. Bettelheim believed that this emotional withdrawal was a response to parenting that lacked warmth and affection, particularly from mothers, whom he labeled "refrigerator mothers." His book The Empty Fortress (1967) further elaborated on this idea, pushing the harmful notion that mothers were to blame for their children's autism.
What Led Bettelheim to This Idea?
Bettelheim was heavily influenced by psychoanalytic theory, which emphasized the role of early childhood experiences, particularly relationships with parents, in shaping emotional and psychological development. Drawing parallels between autistic children and concentration camp survivors—Bettelheim himself had been imprisoned in concentration camps—he believed that both groups exhibited similar emotional withdrawal as a result of trauma. In his view, autistic children experienced a form of psychological trauma due to their supposed emotional neglect from their parents, especially their mothers.
His clinical observations and psychoanalytic interpretations convinced him that autism was a defense mechanism against a perceived emotional threat from the environment. The “empty fortress” metaphor thus painted a tragic picture of children locked away from the world due to their mothers' inability to connect with them emotionally.
The Negatives of Bettelheim's Theories
Blame on Mothers: Bettelheim's theory placed heavy blame on mothers, labeling them as the primary cause of autism. This led to immense guilt, shame, and isolation for parents who were already struggling to understand and support their autistic children. It added emotional trauma for families, particularly mothers, and created a deep stigma around parenting.
Ethical Concerns: Bettelheim's treatment methods, which often involved harsh discipline and control in his clinic, later came under scrutiny. Former patients and colleagues accused him of abusive practices, compounding the discrediting of his work.
Discrediting: Over time, Bettelheim’s theories were discredited as scientific evidence emerged to show that autism is primarily a neurodevelopmental condition, unrelated to parenting style. Bettelheim’s psychoanalytic framework, once influential, became outdated and damaging.
Bettelheim's History
After moving to the United States, he became the director of the Orthogenic School at the University of Chicago, where he treated emotionally disturbed children, including some with autism. His approach, however, was later criticized for being unscientific and overly reliant on Freudian psychoanalysis. It was also revealed that Bettelheim's academic credentials were questionable. He had claimed to have a PhD in art history and psychology, but his formal qualifications were less rigorous than he led others to believe.
LeConte Hall and Barrows Hall lose their names.
2020 is a year of upheaval on many fronts. Two of the campus buildings are losing their names. Earlier this year, the now "Berkeley Law" building lost its former name of "Boalt"
More changes are in the offing with Kroeber Hall next.
From Chancellor Carol Christ.
The names “LeConte Hall” and “Barrows Hall” have been officially removed from each building, and are already in the process of being physically removed or covered. For now, until new names have been approved, we will refer to the former, which actually includes two structures, as Physics North and Physics South, and the latter as the Social Sciences Building.
.... The committee, in preparing its recommendation to rename these buildings adhered to a key principle: The legacy of a building’s namesake should be in alignment with the values and mission of the university as expressed in our Principles of Community. That was clearly not the case for either of these buildings.
LeConte Hall
As noted in the committee’s recommendation (LeConte Recommendation), it was in 2015 that our Black Student Union first called for LeConte to be renamed, and while I regret the time it has taken to respond, I am grateful for the continued advocacy and activism that have led to this necessary action. So, too, am I grateful for the faculty in our Department of Physics. In 2018 they passed an informal resolution in favor of renaming the building they are housed in, followed by a near-unanimous vote in June 2020 in support of the outcome we are announcing today.
LeConte Hall was meant to honor two brothers, John and Joseph LeConte, who came to Berkeley in 1869 and were among the most prominent and earliest members of the University of California’s faculty. The LeConte brothers were from a slaveholding family in Georgia and inherited a plantation with 200 slaves. Both brothers participated in the Confederate Army and served the South in the Civil War. Joseph LeConte was an outspoken advocate of deeply racist views. Despite their service to the university, the brothers’ words and deeds profoundly conflict with our values, and with our commitment to equity, inclusion and a true sense of belonging for every member of our community.
Barrows Hall
Barrows Hall is named after David Prescott Barrows, who served as president of the University of California from 1919 to 1923 and as a faculty member from 1910 to 1942. As described in the committee’s recommendation (Barrows Recommendation), since 2015, students, faculty, and staff members of the UC Berkeley community have been calling for the renaming of Barrows Hall due to Barrows’ advocacy of white supremacy and his legacy of racism towards Filipinos, Black people, and Indigenous peoples. He believed and wrote, for example, that Europeans and white people were the only "great historical race," and that, "the black lacks an inherent passion for freedom." Here, too, the historical record provides ample evidence of intolerable racist beliefs and biases that are profoundly contrary to what we know, believe and stand for.
You can learn more about the decision and the process the campus followed in this article on the Berkeley News site.
These actions come in the wake of our January unnaming of what is, for the time being, known as The Law Building. The Building Name Review Committee has advanced for consideration one additional proposal for the unnaming of Kroeber Hall, and we hope to share word of the outcome in the weeks ahead.
A building name is more than a symbol. Those who we choose to honor reflect who we are and what we believe in. I have committed my administration to doing everything in its power to identify and eliminate racism wherever it may be found on our campus and in our community. This is but one step among many that we are taking, and I am deeply grateful for the faculty, students and staff whose activism, caring, and engagement are helping us reconcile with our past for the sake of a better future.
Spectrum at Cal Fall 2020 Special
For any spectrum event, if you are non-Berkeley student and want to attend, please email spectrumatCal@gmail.com for a link.
Acceptance Week Events - Nov 2020
Autism Policy Panel
Sam Crane from ASAN and Kim Musheno from the Autism Society of America
joined us to discuss Autism Policy.
Recording at
Research Panel
Three Berkeley Professors, Steve Hinshaw (Psychology), Laura Sterphoni (Education) and Feldman (MCB) share their research in the field of autism.
The Acceptance Committee of SpectumAtCal at work planning upcoming events
Log Kya Kahenge: Abelism in the South Asian Community
The event is a collaborative effort between three student groups on the UC Berkeley Campus. the ASUC Disabled Students Union, Spectrum At Cal and the ASUC Senator Ruchi Shah’s office
Even Recording https://youtu.be/ClM3urKLpko
Career Panel 10/29/20
An informative and educational Career Panel from working professionals on the spectrum💻🤩
Black Autistic Lives Matter 10/10/20
Oct 10. 2020
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Vocab & Gender 10/23/20
Our virtual meeting exploring vocabulary and gender on the autism spectrum!
In this meeting you'll get an introduction into important vocabulary to help you understand people on the spectrum. This includes conceptual frameworks, as well as language to consider when interacting with other's who are autistic. Lastly, get informed about how gender is an important dimension of autism and learn how there may be some gender differences
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Peer-to-Peer Program
Spectrum At Cal is collaborating with WeEmbrace to launch the Peer-Peer Program at Cal.
Intern@Spectrum Opportunity
Spectrum Board is looking for 2 Interns For Marketing and for Community Outreach Teams
Join Spectrum At Cal
Come for our first general Meeting
Board Meeting 9/19/20
Our First Board Meeting today
9/6/2020
It was great meeting with the team, but was nostalgic for the last year's ambience
As we planned the events and activities for the fall sem.
Word Cloud from today's team building Exercise
What does Autism mean to you?
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Virtual Calpalooza
9/2/2020
Come, meet and chat with us.
Informational chat for students to get to know the org.
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Mental Health Week
An event kicked off even before the semester began. Spectrum At Cal presented on 2 different occasions.
Why Autistics Belong and How to be Ally to Neurodivergents
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